Blog created & maintained by Brayden Alexander Global Foundation for Hydranencephaly, Inc. which does business as Global Hydranencephaly Foundation; a registered 501c3 nonprofit organization supporting families across the globe who have been given a diagnosis of hydranencephaly.
Monday, August 29, 2011
Though this is not the story of one of our own little bees, who are living with hydranencephaly, I feel that Tim Krahling's story is one worthy of sharing... an honorary "bee".
The Tim Krahling Story Having Left Home, A Survivor Adjusts to his New Life
"With Independence Comes Responsibility"
By Crocker Stephenson of the Journal Sentinel
Posted: September 16, 2007
After graduating in June from Waukesha West High School, Tim Krahling left his mother's home and moved into his own apartment in an assisted-living facility. Both Tim Krahling and his mother, Kathy Krahling, are getting used to their newfound independence, as he takes classes on being on his own while his mother faces a house now just occupied by two dogs.
"For the first time in my whole life I don't have anyone depending on me but me." says Kathy Krahling, who like her son Tim is experiencing her first weeks of independence as three of her children have left home. Kathy's two dogs, Brittany and Toby, join her in the empty room that used to be Tim's.
Although many of his fellow residents at the facility are far older than he is, Tim Krahling often has the company of his longtime nurse Chris Moreira. When not logged onto MySpace.com, he enjoys playing video games.
Tim Krahling is learning skills, including how to use a vacuum, as he takes classes in independent living. He recently finished a summer job at an electronics store and has applied for a permanent position there.
In a nine-part series published Jan. 28-Feb. 5, the Journal Sentinel tells the story of Tim Krahling, whose birth nearly 20 years ago spurred a debate over the rights of parents and society to care for a child born with severe abnormalities.
But the boy, whose birth spurred debate over the rights of parents and of society to care for a child born with severe abnormalities, not only lived, but grew up and became a man.
He graduated from high school, found an apartment, moved away from his mother's home.
And though family, friends, social workers, teachers and nurses remain at his side - indeed, remain critical to his survival - these are Tim Krahling's first weeks of independence.
Twenty years after doctors pronounced his spina bifida the worst they had ever seen, 20 years after they predicted his life would be a short and painful struggle, Tim is on his own.
At MySpace.com, where Tim's online tag is "Six Wheeler" - his electric wheelchair has six wheels - Tim has this to say about an existence that doctors once speculated would not be worth living:
"i love life!!!"
On a warm afternoon in early fall, the windows of Tim's one-room apartment are open. They look out to a grassy field. One of Tim's nurses, Chris Moreira, sits in a chair at the foot of his bed, reading a novel in the sunlight.
Tim has a friend over: David Zutavern, a 19-year-old University of Wisconsin-Waukesha student who, between political science and English, is getting in a session of the game "Bioshock" on Tim's Xbox 360.
Tim releases one face-splitting yawn after another. He stayed up much too late last night, because he felt like it.
Tim's adoptive mother, Kathy Krahling, lives in a house with three empty bedrooms a few miles from Tim's apartment.
Kathy and her then-husband, Henry Krahling, adopted Tim when he was 7 weeks old. Altogether, she is the mother of 10 children: three biological children, the oldest of whom is disabled; one stepchild; and six adopted children, five of whom are severely disabled. She was the foster mother of at least 25 children, most of them disabled. She cared for two foster children up to their deaths.
And now, all her children are moved away. Kathy is 59 years old. She is without children for the first time in 42 years.
"For the first time in my whole life," she says, "I don't have anyone depending on me but me."
Kathy is sitting on her back patio. Just months ago, with three disabled children still at home, her house was a chaos of caregiving. Now, but for two high-spirited dogs, it is quiet. The endless lists of tasks Kathy once needed to accomplish each evening are gone. She can sit here and watch the shadows lengthen across her lawn.
This is not the liberation one might think.
Kathy grew up feeling unwanted and unloved. She found in her children a chance to love and to be loved in a way that her own childhood had denied.
"In them, in all my children, I found a place to go with the love I had to give, the love that nobody else wanted," she says.
"They gave me more than they got."
These are the first weeks of Tim's independence. They are the first weeks of Kathy's independence, too.
Tim graduated from Waukesha West High School in June. A blue and silver tassel from his graduation hangs from the lamp on his dresser.
He still attends independent-living classes three days a week at Waukesha North, and he just finished a summerlong trial job at an electronics store. He's applied at the store for a permanent position.
One of the highlights of the past few months was his high school prom.
All school year long he harbored a crush for a brown-haired girl with green eyes. He would see her during lunch, but felt too shy to speak to her. At the prom, the brown-haired girl with green eyes asked Tim to dance.
Yes, he said.
Tim moved out of Kathy's house at the end of August. His 19-year-old sister, Lissy, moved to Henry Krahling's home in Ladysmith in July. His 22-year-old sister, Amy, moved to a long-term treatment facility in Juneau in May.
As each left, Kathy closed the door to their rooms. It took her a few weeks to open them again. Lissy will be visiting often, so she put a new bed in her room. She is slowly turning Amy's room into an office (a picture of an angel still hangs on the wall). But for an ironing board, Tim's room is empty.
Kathy adopted Amy when she was 12 days old. She was born without her brain's cerebral hemispheres and was not expected to live beyond two years. Lissy, born with an array of genetically based abnormalities, was not expected to live beyond six months. Tim was not expected to live into his second year.
These were the expectations Kathy had when she adopted them. In part, because of her care, each has lived decades longer. A blessing, Kathy says.
Perversely, as each child turned 19, Kathy stopped receiving special needs adoption subsidies. It was a loss of almost $1,400 a month for Lissy, $1,000 for Amy and $800 for Tim. This loss of subsidies was more than a disincentive to continue caring for Amy, Lissy and Tim.
"It made it impossible," Kathy says. "These kids are financially punished for staying alive."
On the door of Tim's closet is a list of things he must remember to do. Check his catheter. Empty his leg bag. Check his medication. Make sure he has set up transportation for work or for school.
"With independence comes responsibility," Tim says.
And other things. Tim lives as an independent tenant in an assisted-living facility. The advantage is that if he were to have trouble, his room is equipped with alarms. The disadvantage is that his neighbors are three or four times his age. Tim is profoundly social. But there is no one around to make friends with.
His biological parents visit. Kathy comes by two or three times a week. He has nurses. David Zutavern visits.
"I don't feel lonely," he says.
But much of the time, he is alone.
After David leaves, Tim takes the elevator to the public computer on the facility's second floor. He signs into his MySpace.com account. After he deletes the dodgy-looking messages, he is left with about a dozen people on his friends network. Most are people he doesn't know. A message pops up: "Angelina (of Fort Wayne, Ind.) wants to be your friend."
"I don't know any Angelinas," Tim says, and deletes the invitation.
JSOnline.com The Journal Sentinel published a series of stories about Tim Krahling's life this year. "In a Child's Best Interests: The Tim Krahling Story" is atwww.jsonline.com/links.